The benefits system can feel, at times, like an unnavigable maze, especially for people with Parkinson's whose conditions are so varied and fluctuate so regularly. On today's episode of Movers & Shakers, the gang gather in the pub to try and put the benefits system on trial (at least, that's what The Judge does). From PIP payments to Universal Credit, how much support is there really for people struggling financially under the pressures of Parkinson's? And does the system, at present, do enough to maintain the dignity of people forced to engage with it?
By Podot
Each week Rory Cellan-Jones guides us between the laughs and moans in the pub. To read Rory's summary of this week's episode click here.
Guest Biography
Sue Christoforou
Sue Christoforou is a Policy Manager at Parkinson’s UK, covering welfare benefits, employment and transport. Her role involves working with people with Parkinson's to understand how government policy affects them and what change we can influence to improve life for people living with the condition. She has worked in policy influencing roles for a wide range of health and other charities over a number of years and joined Parkinson's UK in 2022. Sue is passionate about working with people with Parkinson’s to make sure their voice is heard by policy decision makers.
Here's a link to a blog on the report, Still Nowhere Near Enough, which includes a link to the report itself, information on where people can get help and a campaign action to take.
Karen's Story
Karen like many people living with Parkinson's has been struggling financially for a while because of a misunderstanding of her condition by the benefits assessor. A former dog groomer and trainer, Karen was forced to give up her business because of a loss of strength and dexterity to handle dogs. Karen cites that at the age of 62 with no transferable skills, she felt forced to turn to benefits to support herself, but she was rejected. Karen's limited income left her barely able to cover the basics, such as food and heating. She also became socially isolated because of a lack of funds and being forced to move into a cheaper area away from friends to save money on rent.
Not long ago, PUK received this update from Karen.
Things are finally looking up for me after 2 awful years of stress and trauma. I have recently, with the help of Jane and Tina (Benefits advisors from PUK), got the enhanced rate of PIP and now have a Motability car on order. I also start drawing my pension at the beginning of March so things are easier financially. And I am moving away from this awful area into a lovely little annexe at a friend's house out in the countryside which is going to be so much better for me and the dogs. I am already feeling so much better mentally and I've not even moved in!!
Some useful links
Parkinson's UK - The Chancellor's Autumn 2023 Statement & Parkinson's
My HWP is 71. He has just applied for Attendance Allowance. It is a 30 page document and we found it difficult to complete. Fingers crossed he will be eligible for it. Surely, with a diagnosis of PD and on PD meds - this should be an automatic benefit. As set out in the Parky Charter - hopefully others over State Pension age will receive Attendance Allowance at diagnosis.
The episode on PIP was excellent but one detail was omitted. You have to claim PIP before you are eligible for state pension. After that point you claim Attendance Allowance. If you have been awarded PIP before you reach pension age you continue to receive it afterwards. I would hate older people struggling through the PIP form and then finding out they have applied for the wrong benefit.